TY - JOUR
T1 - Parental experiences and perspectives on the value of seizure detection while caring for a child with epilepsy
T2 - A qualitative study
AU - van Westrhenen, Anouk
AU - de Lange, Wendela F M
AU - Hagebeuk, Eveline E O
AU - Lazeron, Richard H C
AU - Thijs, Roland D
AU - Kars, Marijke C
N1 - Funding Information:
This work was supported by the Netherlands Organization for Health Research and Development (ZonMW) [Project number: 446001009]; the Dutch National Epilepsy Fund and Health Holland [Project number: 40-41200-98-9335]; and the 'Christelijke Vereniging voor de Verpleging van Lijders aan Epilepsie'. LivAssured, the company developing the NightWatch device, has obtained an exclusive license to implement or use the data in the future for commercial purposes or in commercial enterprises in exchange for a percentage of the revenue for the institutes (SEIN, University Medical Center Utrecht and Kempenhaeghe). The Dutch Tele-Epilepsy Consortium will receive more research funds from the institutes as a consequence of this license receive money if NightWatch yields profit. None of the authors has shares in the aforementioned company nor in the aforementioned institutes, nor has any of them received nor will any of them receive any compensation referring to future sales of the NightWatch. The funding sources had no role in the study design, analysis, or decision to submit for publication.
Publisher Copyright:
© 2021 The Authors
PY - 2021/11
Y1 - 2021/11
N2 - INTRODUCTION: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes.METHODS: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4-16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis.RESULTS: Twenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems.CONCLUSION: Healthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care.
AB - INTRODUCTION: Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes.METHODS: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4-16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis.RESULTS: Twenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems.CONCLUSION: Healthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care.
KW - Burden of care
KW - Implementation
KW - Parental caregiving
KW - Seizure detection devices
KW - Sudden unexpected death in epilepsy (SUDEP)
UR - http://www.scopus.com/inward/record.url?scp=85115978032&partnerID=8YFLogxK
U2 - 10.1016/j.yebeh.2021.108323
DO - 10.1016/j.yebeh.2021.108323
M3 - Article
C2 - 34598099
SN - 1525-5050
VL - 124
JO - Epilepsy & Behavior
JF - Epilepsy & Behavior
M1 - 108323
ER -